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Old 09-09-2007, 07:53 AM   #1
Joe
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Breast Cancer Awareness Month is Upon Us

And with it comes the marketing of breast cancer to increase sales. Although some campaigns such as AVON, breast cancer stampa and Yoplait yougurt do help breast cancer research, there are many others out there just for personal gain. Choose carefully what you purchase

There are also several breast cancer "non-profit" web sites that more resemble EBAY. These websites must sell merchandise to cover their administrative expenses and the high salaries of their directors and in some cases over $200,000 per year:
http://www.charitynavigator.org/ Search for your favorite cancer "non-profit" We are not listed because we seek only enough funds to cover our needs less than $100,000 per year.
The HER2 Support Group is run entirely by volunteers that receive no direct compensation.

We fully support Breast Cancer Action's "Think Before You Pink" program: http://www.thinkbeforeyoupink.org/
A new twist: The HER2 Gene is now being marketed www.her2genes.com


Regards
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Old 09-09-2007, 08:21 AM   #2
madubois63
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Actually - It is still Leukemia and Lymphoma Awareness Month (which doesn't get anywhere near as much coverage as breast cancer).
Cancer Awareness Calendar
http://www.huntsmancancer.org/cancerInformation/awareness/september_multi_leukemia.jsp

and it is also Gynecologic Cancer and Prostate Cancer awareness month...

Joe - Thanks for all you do...
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Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
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GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
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Old 09-09-2007, 03:38 PM   #3
StillHere
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I think maybe Joe was thinking ahead to October, which is Breast Cancer Awareness Month.
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04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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Old 09-09-2007, 03:48 PM   #4
weezie1053
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Joe,

Our shopping mall will be working with the ACS on a Breast Cancer Awareness promotion. I read your thread about organizations that misrepresent that their proceeds benefit BC Awareness. Can you guide me from where we should look to purchase items for the promotion of breast cancer, such as the pink bracelents.

Thanks.

Louise
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  • Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
  • AC/Cytoxin combo - 4 treatments (dose dense);
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  • Mammo 02/14/08 - NED; MRI - 08/2008 - NED
  • 2 year Anniversary - 09/08
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Old 09-09-2007, 05:40 PM   #5
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Louise,
I would recommend Komen, ACS and AVON. They all have magnificent track records.

There are also many wholesalers who sell bc support items. You can purchase these and donate the proceeds to Komen or ACS.

Regards
Joe
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Old 09-09-2007, 06:21 PM   #6
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Exclamation Oh, MY GOODNESS!!

That link in Joe's post takes you to a site "owned or controlled" by Genentech. If you click the link on how to buy a pair of those Frankie B Her2 jeans, it takes you to the Frankie B web site and I could not find the jeans - not yet anyway. All their clothes cost between $100 and $300 so no wonder they say they can donate $107 for each pair sold. (I think the other clothes are created for STICK PEOPLE and not real people ...)

I knew it was "that time" as I have seen a couple of new BC support doozies! First was the Reidel wine glass ware with the pink ribbon on the box. Don't know how much or to where they give some percentage. Then I saw some food items in the grocery store.

YIKES!
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MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 09-09-2007, 06:42 PM   #7
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Last years shocker was pink Campbell's Tomato Soup cans.

Regards
Joe
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Old 09-09-2007, 07:11 PM   #8
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www.thinkbeforeyoupink.org

Thanks Joe!!!
Very informative and very interesting----a must read for all to spread the word!

http://www.thinkbeforeyoupink.org/PDF/NYTimesAd.pdf
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Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 09-10-2007, 05:14 AM   #9
Sheila
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Steph...about the Her2 Jeans

That was an old promotion from last year....Frankie B did these jeans and they were sold for a couple months, a limited supply....and yes, quite pricey. not to mention slim fitting...obviously not designed for the woman undergoing Herceptin or chemo who has added a few pounds! Don't know if she will do it again this year....I emailed a question about these jeans when they first came out, and Frankie B , (Daniella) called me personally to answer my question. She is famous for notoriously LOW rise jeans, although this pair was somewhat higher in the waist.
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
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6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 09-10-2007, 07:17 AM   #10
Sandy in Silicon Valley
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Exclamation Pinky-poo month

Joe - thanks for the link to BCA's Think Before You Pink consumer awareness campaign...

I've got a suggestion for an antidote to the exploitive merchandizing that goes on during the month of October.

I think that it's time that people with breast cancer raise our voices in protest about the insufficiency of government spending on health-related research in general, and breast cancer research in particular.

Experimental research to find more/better treatments, diagnostic tests, and understanding of the complexities of breast cancer has, in the last decade or more, been left mainly to pharmaceutical companies, which have vested interests in the results. So they are motivated to design studies, and publish results, only in order to show that their own products are effective. This is NOT objective, unbiased research, and often, if the results are negative, we, the public, don't get the information - or if we do, it's only after outside testing or data collection has "spilled the beans" (e.g. Vioxx, bone marrow transplants for late stage breast cancer).

Plus, in the rush to get drugs to market & profitability, the FDA's rigorous independence has been compromised. Even Herceptin, if I understand correctly, was rushed to Stage IV breast cancer patients BEFORE it was documented that along with, or swiftly following, Adriamycin chemo tx, the risk of left ventricle heart wall damage was dangerously high, and folks were dying of CHF!

IMO, we need to get back to a place where Principle Investigators are NOT employees of one or another pharmaceutical companies! There's too much incentive to turn "research" into a marketing tool, when one's paycheck is coming from corporations (and indirectly, stockholders) wanting to see a profit, and quickly...

Thanks for the opp'ty to start off my week with a fave rant!

(((hugs)))
Sandy in Silicon Valley
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Old 09-10-2007, 07:46 AM   #11
Joe
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Ironicly, it was patient advocate groups which pressured for the release of Herceptin. This is documented in Robert Bezel's book: "HER2-The Making of Herceptin" . I highly recommend this book to everyone.
It is available at Amazon.com. A good used copy of the book is less than $5.00

Regards
Joe
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